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The Family Journey

A map for every stage of your family's journey.

From the first diagnosis to planning for the years ahead. Tell us your state and where you are today. We will show you what to do next and who can help near you.

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A mother laughs with her son on a park bench.

Welcome to Holland

In her 1987 essay Welcome to Holland, Emily Perl Kingsley compared learning your child has a disability to planning a trip to Italy and landing in Holland instead. Not a worse place. A different one, with its own beauty, and nobody handed you a map. This page is that map.

Read about the essay. Every family's trip is different, and some parents describe theirs in other words. All of them are welcome here.

Free download

Download the Family Journey Guide by ConnectIDD!

All eight stages in one printable guide, from diagnosis to planning for the future. Questions to bring to every meeting, a care binder checklist, a letter of intent starter, worksheets, and national resources with live links.

Download the guide PDF, 22 pages, 5 MB. Free for every family.

The journey

Eight stages most families pass through

Pick a stage to see what is happening, what to do now, what to start planning, and who can help in your state.

    Across every stage

    The things that sit on top of everything else

    Money, legal decisions, and long waiting lists do not wait for the right stage. Start these early, and come back to them often.

    Why we built this

    For most families, caregiving gets lighter over time. For families like yours, it gets heavier.

    The Texas Disability Project listened to tens of thousands of families, people with disabilities, and providers. Researchers at Feedback found the same pattern again and again: the work of caring grows as a child grows, and so does the worry about the future.

    47,278posts and comments from Texans, studied for the project
    24 to 40hours a week of unpaid care families give
    78%of conversations were about systems failing families
    Caregiving over a lifetime For most families, caregiving is highest in early childhood and falls as children grow. For families where a member has a disability, it starts high and keeps rising through school, young adulthood, and the parents' aging years, and the gap between the two keeps growing. Pressure points: diagnosis and early intervention in early childhood; IEP battles and burnout in the school years; the services cliff and adult waitlists in young adulthood; estate plans and post-caregiver fear as parents age. More careLess care Families with a disabilityMost other families The gapkeeps growing Early childhoodDiagnosisEarly intervention School yearsIEP battlesBurnout Young adultServices cliffAdult waitlists Aging parentsEstate plansPost-caregiver fear
    Illustration based on Feedback's "Temporal Architecture of Caregiving" for the Texas Disability Project (2025). The lines show the pattern families described, not measured values.

    Want every stage in one place to print and share? Download the Family Journey Guide by ConnectIDD!

    Download the guide

    Know a great guardianship attorney, parent group, or advocate?

    We are still building listings for some of the help families need most. Add an organization or professional in your community, and we will verify it and put it in front of the next family.

    Add a listing

    This guide shares general information, not legal, medical, or financial advice. Rules change and differ by state, so check with the agency or a qualified professional before you act.

    Where this information comes from
    • Family stages, quotes, and the caregiving pattern: The Texas Disability Project, Phase One Report (2025), led by ConnectIDD with The Meadows Foundation, Feedback (qualitative research), and The Perryman Group (economic research). Quotes are from public posts by Texas parents studied by Feedback.
    • State facts: State of Support, built from KFF, the U.S. Department of Education (IDEA Section 618), State of the States in IDD, the ICI National Survey of State IDD Agencies, RSA state plans, and the National Resource Center for Supported Decision-Making. Each fact names its year.
    • Listings: the Disability Atlas, the ConnectIDD directory of disability services in every state and county.
    • ABLE rules for 2026: disability starting before age 46, and a $20,000 yearly contribution limit, per The Arc.